BRCA+ Epistemology and Masha Gessen’s Blood Matters

I picked up Masha Gessen’s Blood Matters after reading a glowing review of it in the NYT. It’s a nonfictional exploration of the cultural politics of genetics that begins with her mother’s death from breast cancer and her own deleterious BRCA1 test results. Along the way, she discusses subjects as varied as what makes a person decide to undergo genetic testing and the treatments available for people with extremely rare inherited mutations. She interviews scientists, doctors, family members, advocates, patients, and many others from Russia, the United States, Canada, and Israel. Wide-ranging, elegantly written, analytically astute: this is the BRCA+ book I’ve been hungry for. I devoured it in just a day. Go read it. Go read it now.

Much of the book involves Gessen’s search for answers to the thorny ethical, practical, and cultural questions that genetic mutations give rise to, so that she can make informed decisions about what to do with her new-found knowledge of her BRCA+ status. Like Joanna Rudnick, Gessen starts off not wanting the preventative surgeries that her doctors and seemingly everyone else recommends, but she ultimately ends up having prophylactic bilateral mastectomies with DIEP FLAP reconstruction. She has also documented her decision-making process in a series of articles for, pieces of which are included in this book.

Although most of the book in written in a journalistic mode with Gessen observing and recounting scenes in laboratories or clinics, some of the moments that I liked most were when she zooms in on her own personal experience. She talks about the loneliness of being BRCA+ and her envy for those with support communities to help them get through it, like a group of cousins who are all “in it together.” She discusses her hesitancy to dive into the online BRCA+ community, which she seems to find surreal. She mentions that she got tested for her mother’s mutation because she was confident that she’d test negative. She describes the inadequacy of gene therapy and overly chipper counselors who cock their heads in perpetual sympathy as they carefully phrase medical protocol. She becomes too anxious to do self-exams, because she fears her body’s capacity to develop cancers. She traces the mutation as far back through her family tree as she can by piecing together family lore. I had to resist the urge to write “me too!” repeatedly in the margins.

Most important, she briefly discusses the shift in identity and world view that a BRCA+ diagnosis brings:

“I belong to a generation that grew up believing we were shaped by love, care, or lack of it–or perhaps even the number of books on our parents’ bookshelves. But we will go to our graves believing that it is a combination of letters in our genetic code that determines how we get there, and when. Our concept of the stuff we are made of will have undergone fundamental changes” (14).

YES. THIS A THOUSAND TIMES. Testing BRCA+ changed my life utterly and irrevocably. One day, I was a normal healthy person. The next, I transformed into a pathologized being who grapples with obscure family histories, an army of doctors of varying skill and humanity, a capricious insurance industry, fear of cancer and surgery, social stigma, and the weight of irreversible medical decisions. But the changes wrought by knowledge of being BRCA+ go far deeper than that. The way I think of myself, my body, my family, my life, and existence in general has shifted dramatically.

After discovering my BRCA+ status, I went through not only an existential crisis, but also profound epistemological and ontological shifts. I had a narrative in my head about my life and my place in the world that must be rewritten to accommodate the fact that the threat of cancer has been lurking within me since the moment of conception. It seems as though I never stood a chance, like something out of a futuristic naturalist novel.

Since I got my test results and entered what Gessen calls “the cancer caste,” I’ve said the words “biology is destiny” and “I am not the universal subject” many times half-jokingly. I now see the world through BRCA+ lenses and I inhabit it within a deviantly BRCA+ body. I reject the genetic testing cliche that “knowledge is power,” because although I have always been BRCA+, my discovery that I am BRCA+ has been epistemologically ravaging and subjectively devastating. It has changed me in ways that I did not want to change.

However much cold comfort it may be, Gessen’s book suggests that BRCA+ women are the vanguard patients of the medical industry. We struggle with knowledge and choices that future generations may take for granted as so-called “personalized medicine” will likely require routine testing for genetic anomalies as part of basic care. Every human being has genetic mutations. If knowledge of mutations for hereditary diseases (or, as Gessen discusses, hereditary behaviors like alcoholism and aggression) becomes widespread, then everyone will become a mutant and being a carrier–of BCRA1/2, but also illnesses like Alzheimer’s, Parkinson’s, Lynch syndrome, etc.–will lose its stigma and hopefully its shattering effects.